Relief for endometriosis sufferers as Visanne listed on PBS

A drug found to help reduce the debilitating pain of endometriosis has been listed on the PBS, offering hope to thousands of sufferers.

Thousands of women suffering from the “invisible” but crippling disease of endometriosis will for the first time in three decades have access to a new affordable treatment.

With one in seven Australian women afflicted by the incurable inflammatory condition – and more than 40,000 admitted to hospital – the federal government has moved to list what has been described as a “life-changing” drug on the Pharmaceutical Benefits Scheme (PBS).

Among other symptoms, women suffering from endometriosis have tissue similar to the lining of the womb growing in other parts of the body, causing pain and scarring that can join internal organs together.

It has also been linked to infertility.

Sufferers have long been misdiagnosed and frequently their symptoms are dismissed as “period cramps”, despite some experiencing pain so bad they black out.

Endometriosis sufferer Syl Freedman has welcomed news that Visanne will be subsidised by the PBS. Picture: Supplied

Taken as a daily tablet, Visanne can suppress the growth of the abnormal tissue and shrink the lesions it forms.

Without subsidy, patients might pay around $750 per year for treatment.

The PBS listing means pension and concession card holders will pay about $90 per year and general patients about $380.

Syl Freedman (right) and her mum Lesley Freedman founded EndoActive to advocate for sufferers. Picture: Supplied

Professor Jason Abbott, an obstetrician and gynaecologist from the University of NSW, said there had been an increase of more than 40 per cent in hospital admissions due to endometriosis in the past decade.

“Subsidised access to this medicine will be very welcome news for a large number of women living with this invisible disease,” he said.

“There is no cure for endometriosis, and it can last for decades.

“Affordable access to treatment options to help control symptoms is extremely important for a patient’s quality of life.”

‘It reduced my pain about 85 per cent’

Lauren Jeffries, 31, was diagnosed with endometriosis about 10 years ago.

She underwent surgery soon after to remove lesions but even after that the pain continued.

“Sometimes it was like a sharp stabbing pain that would make me have to crouch over in pain,” she said.

“I’ve been in so much pain, I couldn’t even brush my hair.”

But seven years ago she started taking Visanne and it changed her life.

“Pain-wise it has reduced about 90 per cent,” she said.

She said she still had “flare ups” while on the medication but they were short-term, rather than lasting the whole day and night.

“I feel like one of the lucky ones. My life has completely turned around. My hope is that other women might now also be able to live a normal life,” she said.

Another endometriosis sufferer, Sylvia Freedman waited 10 years to be diagnosed, despite experiencing chronic pelvic pain so severe she occasionally blacked out.

Despite being admitted to hospital multiple times, Ms Freedman said her suffering was repeatedly dismissed by health professionals who told her to “deal with it” or wrote it off as “period cramps”.

Ms Freedman, who co-founded EndoActive with her mum Lesley to advocate and raise awareness for sufferers, welcomed the drug listing.

“Inside it felt like I was being ripped apart,” she said.

“It just wasn’t the kind of pain that I could push through.

“Endo remains taboo and continues to be shrouded in mystery. Although awareness has been improving, there are still significant gaps.

“We need ongoing education and support to ensure women are not continuing to suffer in silence.”

Health Minister Mark Butler said women living with endometriosis had suffered in silence for too long.

“Women are suffering unnecessarily. They’re having their experiences dismissed, being called hysterical and accused of drug shopping. Women’s pain is real and it’s time we stop telling women to just suck it up.”

Endometriosis expert Dr Neisha Wratten, who was one of the first doctors in Australia to prescribe Visanne, described the impact of the treatment as “dramatic” but “only for those women who could afford it”.

“This is very good news, not only for women impacted by endometriosis, but also for those who support them in their struggle,” she said.

Do you have a story for The Daily Telegraph? Message 0481 056 618 or email [e-mail]

Originally published as Relief for endometriosis sufferers as Visanne listed on PBS